On April 22, 2007 we became pround parents of a beautiful, happy, and seemingly healthy baby girl. We decided to name her Jocelyn Paige, Daddy’s pick from the beginning. She is our first chld and boy was it an amazing experience. I can’t even put into words how we felt that day and everyday since. God has truly blessed our lives. We had a great pregnancy and delivery. Everything went great and now we have this perfect little girl.
After about 3 1/2 months we noticed Jocelyn still had no interest in lifting her head. We observed but didn’t want to compare. “Maybe she just wasn’t ready,” we thought. At her 4 month appointment we brought this issue to the doctors attention. She said Jocelyn had extremely low muscle tone (hypatonia) and wanted to refer us to a neurologist. After many tests, tears, and questions the doctors came to the conclusion that Jocelyn has SMA. Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common “rare disorder”: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. (www.fsma.org)
Please keep Jocelyn in your prayers. She is a very strong and brave little girl.